Need Advice on possible Endometriosis please!

Any ladies here have any experience or knowledge of endometriosis? I get right shoulder pain every month right before and at the beginning of my period even before TTC. I kept thinking it was from carrying my handbag so got a smaller bag 🙄 then when we started TTC (trying to conceive) 19 months ago I made the connection.

I also get very dark spotting in my TWW. I went to the doctors with it last summer and she suspected endo but after an ultrasound told me that I didn’t have it. But I know that’s not actually a reliable way of diagnosing it and she could be wrong.

When I asked her how she explained my shoulder pain, she said “retrograde bleeding” where sometimes during your period blood goes the wrong way and in to cavities in your body. I accepted that but recently, suffering my shoulder pain again, I decided to google retrograde menstruation for more info. All that comes up is info about endo 😩 It seems retrograde bleeding is a main cause of endo. So why would the doc be so dismissive?!

It also seems retrograde bleeding is sometimes caused by an abnormally formed uterus and mine is tilted so to me it’s all suspicious enough to warrant further investigation. Thoughts? Should I go back and push for further testing? Would the next step be straight to a laparoscopy? We’re 19 months TTC (trying to conceive) with no success. Sperm is fine, 21 day bloods fine.

My reflexologist suspected my progesterone was dropping too quickly and causing the spotting so asked me to temp this month but temps have stayed high so that doesn’t seem to be the problem.

Last year I told her I didn’t get very painful periods but every month that passes they’re getting more painful and this month was agony, as well as extreme lower back pain in the days leading up to it. I also have extreme pain throughout my abdomen when I pass a stool during AF, I honestly just thought that was normal?! It’s not something you tend to discuss with other women lol.

So yeah just any advice on if this still sounds like endo despite clear ultrasound? And what I should do? I was on BC pill for 10 years until 3 years ago so I guess that surpressed symptoms for a long time.

Comments (3)

I have endo and do get the right shoulder pain. Also have dark spotting, mine comes after af but I know it can happen any time. In my experience you really have to push for a lap and the less I mentioned ttc the further I got with them going ahead with it. Seems as when you mention your ttc they're not really interested!! In the end I wemt on the nhs endo page and wrote down all the symptoms I had and they couldn't turn me away then! I was right and I did have it but had I have not pushed for the diagnosis I probably wouldn't have had one! I also had scans and nothing showed on there. It's so bad how many doctors think it would show on a scan! In some very extreme cases it can but in more cases it isn't shown at all on an ultrasound. I had probably been complaining of my endo pains and periods for over 7 years and only when I started ttc did I hear of endometriosis and put the 2 together xxx

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DS- March 13 TTC My (25) #2 His (31) #1-Â since Jan '15 taking a break after 3.5 years

I have endo and do get the right shoulder pain. Also have dark spotting, mine...

Posted
08/04/2018

I have endo and do get the right shoulder pain. Also have dark spotting, mine comes after af but I know it can happen any time. In my experience you really have to push for a lap and the less I mentioned ttc the further I got with them going ahead with it. Seems as when you mention your ttc they're not really interested!! In the end I wemt on the nhs endo page and wrote down all the symptoms I had and they couldn't turn me away then! I was right and I did have it but had I have not pushed for the diagnosis I probably wouldn't have had one! I also had scans and nothing showed on there. It's so bad how many doctors think it would show on a scan! In some very extreme cases it can but in more cases it isn't shown at all on an ultrasound. I had probably been complaining of my endo pains and periods for over 7 years and only when I started ttc did I hear of endometriosis and put the 2 together xxx

Thank you Leah that’s actually comforting to know that despite the ultrasound I may still have it and I’m not just being a hypochondriac. Interesting as well that you got further without mentioning TTC! That’s an awful attitude really from the NHS. What did you mention then? Just the pain and bleeding etc? I feel like they’d just suggest I go on the pill then if not TTC (trying to conceive) 🙄 also comforting to know you have a son but I turn 32 this month and I’m losing hope fast. I don’t have time to wait for the average 7 years it takes most docs to diagnose women with endo!!

Hi MrsMoo, I would urge you to persist with the GP and try to get referred asap. Like Leah says they will probably not be keen to do anything if you focus on the fertility issue - you need to frame it differently. It's awful but when I got my referral the GP made it very clear that she was referring for pain/bleeding rather than infertility, implying that the two were unrelated when they very obviously WERE related! As soon as I saw a gynaecologist they started to consider the big picture and were/are very much focussed on getting me pregnant.

A scan won't show much, and an endo specialist will be much better placed to pick it up on ultrasound than a general sonographer. Even a specialist probably won't be able to see mild/moderate endo on a scan. Mine was picked up at ultrasound but only because I had an endometrioma (cyst) which was visible. I was scanned multiple times by various experts and the cyst was all they could ever see, but when I had my lap I had moderate endo over both ovaries which were both stuck to my pelvic wall with it!! So the fact that your scan appeared clear doesn't mean a great deal.

Have you looked at the endometriosis uk website? There's loads of great info on there and they run support groups in some towns which i have found really helpful. I would go to GP with a list of symptoms and insist on a referral. You are entitled to choose your hospital and I would suggest going for a BSGE centre if possible:

They are the most skilled and experienced in treating endo. It really is not normal to have extreme period pain. Before my lap on day 1 I would be unable to move, have a temperature, nausea, diarrhoea and have to take time off every month. Looking back it's crazy that I thought that was normal!! But I did.

I could go on and on about this but the short version of my story is that I did have a lap last May which has hugely helped the pain and i did actually conceive a couple of months after (often happens) but miscarried and am now struggling to conceive again. But thankfully I'm in the system now so they are going to try a few other things. I turn 33 this month and have been trying for first since I was 30 so totally understand feeling there is no time to waste.

Good luck, please feel free to message if you need any more advice or just a chat. It's a massively stressful thing to go through xx

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